Sunday, March 25, 2012

"I took my love, and I took it down. I climbed a mountain, and I turned around. And I saw my reflection in the snow-covered hills 'til the landslide brought me down...Well, I've been afraid of changing 'cause I've built my life around you. But time makes you bolder; children get older. I'm getting older, too."-Stevie Nicks, "Landslide"

Regular readers of One Autism Mom's Notes may have noticed that I missed a week of my faithful Sunday and Wednesday postings last week. In fact, one of my good friends, who knows my responsible nature, immediately e-mailed me, knowing that something was wrong when I didn't publish updated posts. Something was wrong. Last Sunday, we had Alex admitted as an in-patient to the Behavioral Medicine Department of a nearby hospital. After about six months of unpredictable behavior, apparently caused by severe anxiety, he had become so agitated and aggressive that Ed and I felt he needed round-the-clock trained psychiatric care to monitor his medications. Thankfully, we were able to find an excellent hospital a little over a half hour away from our home.

While this decision was obviously heart-wrenching for us, we have been extremely pleased with the facilities and staff where he is staying and receiving wonderful care. Basically, they are taking him off the three medications he had been taking and putting him on three new ones. Withdrawal from the old medications will take some time, as will finding the right combinations and correct dosages of new ones. Needless to say, my brain has been overwhelmed dealing with these concerns. Moreover, we've spent a great deal of time regularly consulting with the staff and making daily trips to visit him. Consequently, I haven't found the time to write the blog.

As we go through this situation, I have been taking notes and will relate our experiences in future blog entries in hopes that others can benefit from what we have learned. For example, we've discovered what a medical power of attorney document is and why parents of children over 18 with autism should have one in place before one might be needed. Once I wrap my brain around all the new information we've gained this past week, I will have many topics for future blog entries. In the meantime, I hope readers understand and will be patient with me until I'm ready to write the regular Wednesday and Sunday entries. We have much work ahead of us, and I'll have many things to share.

"For I am the Lord, your God, who takes hold of your right hand and says to you, 'Do not fear; I will help you.'" Isaiah 41:13

Wednesday, March 14, 2012

Last week, I had the opportunity to watch a fascinating free webinar about brain anatomy. Sponsored the Great Plains Laboratory, Dr. Kurt Woeller offers monthly online lectures about topics typically related to autism. Although I majored in English in college, I’ve always had an interest in medicine and psychology, two of the areas I’ve researched intensively since Alex was diagnosed with autism. This month’s online seminar, entitled “Brain Regions and Their Dysfunction in Autism—Clinical Correlations for Behavior, Language, and Cognitive Problems,” provided a clear description of the anatomy of the brain along with an explanation of how autism symptoms can manifest if inflammation exists in certain regions. Dr. Woeller asserts that brain inflammation is a major contributing and causative factor in autism. Moreover, he cites various sources of neurological inflammation in autism: glutens and caseins from foods, heavy metal toxicity, and infections from bacteria, viruses, and/or fungi, such as yeast. Since we have treated Alex for heavy metal toxicity and yeast overgrowth as well as kept him on a gluten-free and casein-free diet upon discovering he has sensitivities to both, I strongly suspect that many of his issues are directly related to inflammation of his nervous system.

Dr. Woeller’s webinar focused upon regions of the brain and explained how inflammation in these regions can affect behavior and function. A summary of the function of each area and how dysfunction manifests follows.

The frontal lobe of the brain deals with understanding the connection between actions and consequences and making decisions. Those who have inflammation of this lobe tend to have no sense of danger, engaging in risky behavior, such as climbing and fleeing. Problems with this lobe can also lead to a loss of smell and taste. Fortunately, Alex does not exhibit problems with the frontal lobe as he tends to be quite cautious and possesses a keen sense of smell and taste.

The parietal lobe is involved with sensory information and the ability to read and solve math problems. Since Alex is quite strong in his sensory processing, reading, and math skills, I suspect that his parietal lobe has not been affected.

The temporal lobe is responsible for many areas related to language processing, including grammar and word production, semantics of speech, and functions of language, all of which are problematic for Alex. In addition, facial recognition occurs in the temporal lobe, and Alex has some trouble recognizing people’s faces, often confusing his cousins who are siblings. While I think Alex understands what is being said to him fairly easily, he has always had difficulty producing speech. Consequently, his temporal lobe has likely been impacted by neurological inflammation.

The occipital lobe, which receives information from the eyes, processes visual input. Those with problems in this area often cannot identify colors even though they can see them. Alex’s strengths lie in his visual processing because he is quite visually perceptive, noticing small details most people would miss. Hence, he probably doesn’t have issues with his occipital lobe.

The cerebellum, a common site of abnormality in autism, according to Dr. Woeller, coordinates smooth body movement. Symptoms of problems in the cerebellum include hypotonia, or low muscle tone, balance issues, awkward gait, difficulty with speech articulation, and trouble with planned movements. Alex has had problems with all of these areas, which we have addressed with speech therapy and occupational therapy. However, he still struggles with motor issues, which makes self-care tasks difficult for him. Therefore, Alex likely has inflammation of his cerebellum, evidenced by his difficulties with fine and gross motor skills.

For me, gaining understanding about what each lobe of the brain controls and how inflammation can disrupt specific critical processes helped me realize why certain tasks are so difficult for Alex. As we continue to seek ways to help his nervous system heal, we pray that eventually all those tasks that frustrate him will eventually come easily so that he can reach his full potential.

Sunday, March 11, 2012

“Time, time, time, see what’s become of me while I looked around for my possibilities…Hang onto your hopes, my friend. That’s an easy thing to say, but if your hopes should pass away, simply pretend that you can build them again.”--“Hazy Shade of Winter” by Paul Simon

On this first day of daylight savings time, I admit that I dread this annual “springing forward” where the clocks are turned ahead one hour. Since I have to get up by six o’clock every morning to get ready for my job as a teacher, I know that for the next few weeks, I’ll be waking up in the dark again after the past few welcome weeks of awakening to early sunlight. I also know that my body will need a few weeks to adjust to going to bed earlier and getting up earlier as my system tries to reset its circadian rhythms.

I’m certain that those who decided daylight savings time is a good idea probably don’t have to get up as early as my colleagues and I do. In doing some background reading about the origins of this concept of shifting time, I ran across an online article [To read this article, click here.] from National Geographic that indicates Ben Franklin first came up with this idea of making better use of daylight. During World War II, the United States mandated daylight savings time as a way to save resources. In my home state of Indiana, until 2006, most of the state opted not to go on daylight savings time, so in the spring, summer, and early fall, all counties were on the same time, but in the late fall and winter, a handful of counties were an hour behind the rest of the state. Interestingly, a study in Indiana showed that daylight savings time really did not save energy, one of the primary reasons given for moving the clocks ahead one hour.

Besides my resistance to get up earlier in the dark, I always fret about how the time change will affect Alex, who is sensitive to changes. Although he has understood the concept of daylight savings time and has been very aware of telling time, even when he was little because he loved clocks, Alex doesn’t always readily adapt to the time changes in the spring and fall. Over the years, we have tried adjusting his bedtime by a few minutes each night in the days prior to the time changes, and that never really seemed to make a difference. Like his mother, within a few weeks, he simply adapted to the changes and was able to adjust his sleeping habits.

This year, we’re hoping that daylight savings time is the change Alex needs to reset his internal clock that has been off for several weeks. Like a preschooler, he has been getting sleepy shortly after supper and going to bed in the early evening, which means he also awakens between 5:30 and 6:00 A.M. Also, he has been insisting that he wants to eat dinner about an hour earlier than we normally eat, telling us he’s hungry around 4:00 or 4:30 when we usually eat dinner between 5:00 and 5:30. I guess because he starts the day about an hour earlier than he used to has completely thrown off his internal clock and shifted his basic routines of sleeping and eating forward an hour. With fingers crossed and prayers said, Ed and I are hoping that shifting the clocks forward an hour will remedy this situation so that he’ll get up around 7:00, go to bed after 9:00, and be ready to eat dinner at 5:00 or 5:30. In fact, we were tempted to not change the clocks so that Alex would rely on his biorhythms instead of the actual time. So, we shall see how he adapts and hope for the best. Maybe this daylight savings time will be one to celebrate instead of to endure. If Alex adapts nicely, it will be worth getting up in the dark—at least that’s what I’ll tell myself tomorrow morning as I stumble out of bed an hour earlier than my body is used to doing.

“For everything there is a season, a time for every activity under heaven.” Ecclesiastes 3:1

Wednesday, March 7, 2012

Last week, Science Daily ran an article regarding research into the benefits of the gluten-free, casein free diet for children with autism. [The article entitled “Gluten-Free, Casein-Free Diet May Help Some Children With Autism, Research Suggests” may be accessed by clicking here.] According to researchers at Penn State University, children with autism often have gastrointestinal issues and/or allergies, and removing glutens and caseins from their diets seems to improve their physical symptoms as well as their behavior. In this article, one of the researchers, Professor Laura Cousino Klein, suggests that “autism may be more than a neurological disease—it may involve the GI tract and the immune system.” Of course, for years many doctors and parents who have pursued biomedical treatments have asserted that gut issues impact the brain and influence behavior in autism. Some of the benefits found in children who were on strict gluten-free and casein-free diets included improved eye contact, better language production, and increased attention span. Moreover, they found that parents who completely eliminated gluten and casein from their children’s diets found the greatest benefits. Professor Klein emphasizes the importance of vigilance in monitoring the child’s diet, stating, “If parents are going to try a gluten-free, casein-free diet with their children, they really need to stick to in order to receive the possible benefits.”

This research caught my attention because Alex has been on a strict gluten-free and casein-free diet since he was seven years old. At that time, I began reading about benefits of using the GFCF diet in children with autism, and I asked his doctor if we could run a food allergy test. Although I was a bit overwhelmed at the prospect of implementing this restrictive diet, I decided before we ever ran the food allergy test that if he, indeed, showed allergies or sensitivities to certain foods, we would remove them from his diet. I can still remember vividly sitting in the doctor’s waiting room scanning the test results the nurse shared with me before I talked with his doctor.

Disappointed but determined, I realized that we were going to have to eliminate wheat, oats, barley and other glutens as well as all milk products from his diet because he showed sensitivities to all of these foods, plus a few others. Armed with research I’d gathered from the Internet, some food allergy cookbooks, and good advice from other autism moms who had already put their kids on the GFCF diet, we took away the glutens and caseins that were potentially harmful to Alex’s system. Dr. William Shaw’s book Biological Treatments for Autism and PDD helped me to understand that glutens found in grains and caseins found in milk products are proteins that can act as opiates (like morphine) in children who have digestive issues, such as leaky gut, that allow these food products to go to the brain improperly processed. Since Alex often acted “zoned out” when he was little, I suspect this is what happened when he consumed these foods to which he showed sensitivity.

In addition, my research on glutens led me to discover that many people of Irish descent have sensitivity to glutens and do not tolerate wheat well. In fact, many develop celiac disease, which is an inflammation of the intestines that can be controlled by faithfully following a completely gluten-free diet. Since I have Irish ancestors in my Anglo-Saxon heritage, and Ed is nearly pure Irish in his family tree, Alex could have a genetic predisposition to be intolerant of foods with glutens. Although he didn’t seems to have stomach aches when he was little, he often had toddler diarrhea and frequently had projectile vomiting when he was on milk-based formula as an infant. At that time, the pediatrician casually dismissed my concerns of food allergies, but I think he probably was born with those issues.

Fortunately, Alex was quite cooperative about going on the GFCF diet, and his willingness to eat a wide variety of fruits, vegetables, meats, and seafood that were allowed on the diet made this transition much easier for all of us. We suspected that the diet made him feel better because if new food were offered to him, he would ask, “Does this have wheat or dairy in it?” Although his most recent food allergy tests from last spring indicate that he no longer shows sensitivity to glutens and caseins because he has refrained from eating them for over a dozen years, we have kept him on the diet. Any time he has accidentally consumed something with glutens or caseins, we saw behavioral issues that made us realize that he needs to stay on the diet. Recently, perhaps in some sort of young adult rebellion or just curiosity, he has sneaked off and eaten some dinner rolls one evening and doughnuts another. Both times, he went through an emotional roller coaster where he went from being very agitated and hyper to angry and aggressive to feeling guilty and sad, sobbing uncontrollably. Needless to say, we concur with the recent Penn State research that Alex has benefitted from being on the gluten-free and casein-free diet. Now if we can just make sure to keep any of the offending foods away from him and make certain that he doesn’t eat them, we won’t have to see how those proteins negatively impact his behavior.

“Why spend your money on food that does not give you strength? Why pay for food that does you no good? Listen to me, and you will eat what is good. You will enjoy the finest food.” Isaiah 55:2

Sunday, March 4, 2012

This week, I will administer our Indiana state proficiency exams, the ISTEP+, to my seventh grade students. Every year my colleagues have me tell the story of a student I had in class years ago who apparently misread the writing prompt for his essay, which we still find amusing years later. The students that year were to write about the greatest invention in history. As I walked around the room to monitor the students’ progress, I noticed this student had entitled his essay “My Hamster.” I gently suggested that he re-read what the assigned topic was, and as he did, his eyes widened, and he began erasing what he’d written and hopefully chose a more appropriate topic. [Sadly, under the more stringent rules the state has given test proctors this year, I wouldn’t be able to help that poor kid.] Yesterday, I ran across an entertaining blog entry from Look At My Eyes entitled “The Greatest Invention for the Autism World EVER???” [Click here to read this blog entry.] No, the greatest invention wasn’t a hamster, but the electronic timer instead, which holds a special place in Alex’s heart, as I’ve written in previous blog entries. While I’d be hard pressed to choose the greatest invention for the autism world, five items—in addition to the beloved electronic timer—come to mind.

Betty Crocker gluten-free yellow cake mix makes my life so much easier. Before this wonderful product came on the market last year, I had to bake all of Alex’s cakes from scratch. Gluten-free cakes that have a good texture and flavor require measuring three different gluten-free flours (tapioca, potato starch, and rice flours) and adding the proper mix of xanthan gum to help the flours stick together without gluten along with baking powder and/or baking soda to make it rise. With Betty Crocker’s GF cake mixes, I just dump the mix in a bowl with three eggs, a stick of Fleischmann’s unsalted margarine, a little water, vanilla extract, and orange extract (my own addition that Alex really likes), mix with the electric mixer, pour in a pan, and bake. Not only is it easy to make, but also topped with Duncan Hines vanilla frosting, this is one tasty cake.

I’d personally like to thank the creator of the Game Show Network for entertaining Alex for hours on end. Between Family Feud, Lingo, Deal or No Deal, Press Your Luck, and others, Alex has not only enjoyed watching these shows, but he’s also learned some information and strategy by playing along at home.

I don’t know what Alex would do without his beloved calculators. He has calculators of every shape, size, color, and format and can spend hours punching in numbers. Of course, his love of math and numbers has shaped his affection for these handy gadgets. When he was a toddler and had to sit through faculty meetings with me, I’d put him in his stroller and hand him a calculator to play with, and he never let out a peep, fully amused by punching the buttons. Early on, I guess I knew how to keep him happy and calm in such a simple way.

If it were not for melatonin, we would have spent many years sleep deprived. When Alex suddenly developed insomnia around age five, he would wander around the house and watch middle-of–the-night tv, such as CNN. Of course, we couldn’t allow him to be up without our supervision, so we had to give up sleep, as well. The first night he started taking melatonin under the guidance of our doctor, he easily fell asleep at a reasonable hour and slept soundly through the night. I really suspect that he did not have enough natural melatonin in his system, and this supplement provided what he needed. Fortunately, he has overcome this problem and can sleep without taking melatonin anymore, but for those years he couldn’t, I’m thankful he responded so well to this supplement.

For Alex, I think the greatest invention is the computer and the Internet. He has learned so much by playing games, doing Google searches and subsequent research, and typing information into spreadsheets and word processing programs. As I mentioned in a recent blog entry, he is currently fascinated with a website called “Ask God,” and now he begins every morning by consulting with this artificial intelligence site. He shares his worries with “God” about rising gasoline prices, and apparently, he has some good sense about not sharing his identity online. Last week, “God” asked him his name, and he typed in [game show and talk show host] Regis Philbin. Ed and I thought that was pretty clever of him. In addition, I’m pleased that he knows the best way to start the day is by having a conversation with God; now if we can teach him that prayer is better than the Internet, we’ll have taught him well.

“Sing to Him, sing psalms to Him; Talk of all His wondrous works!” Psalm 105:2

About Me

Pam Byrne is the mother of an adult son, Alex, who was diagnosed with autism in 1996, at the age of four. Since then, she has researched autism and pursued various therapies to help him reach his full potential. Along with her husband, Ed, she coordinates Alex's support services, including behavioral, recreational, and music therapies and respite care. A graduate of Valparaiso University, she is a retired middle school English teacher. She lives in Valparaiso, Indiana, with her husband and son.